Baseball Coach donates kidney to player with ANCA Vasculitis

Wake Forest Coach Donates Kidney To Player

by JEFF TIBERII

February 9, 2011 from WFDD

In college athletics, coaches demand a lot of their players. So, for Wake Forest's baseball coach, it was an easy decision for him to give something back to one of his players in need: The coach donated one of his kidneys.

"TIBERII: Kevin was a highly regarded baseball prospect coming out of Georgia, projected as a future major leaguer who could've made almost a million dollars from his first contract, had he skipped college and turned pro. But he didn't - committing to Wake Forest. However, Jordan got sick during his senior year of high school and doctors diagnosed him with ANCA vasculitis, a rare disorder where a person's white blood cells attack healthy tissues."

[There may be more to this story, like a more specific diagnosis, but it is a story worth sharing... -- Joseph]

The source is copyrighted. To read more go to:

http://www.npr.org/2011/02/09/133629790/Wake-Forest-Coach-Donates-Kidney-To-Player

NMVasculitis 2009 Almost Annual Report and 2010 Things to Come

(TIP: Those of you getting Email copies, try reading this online in the blog (http://nmvasculitis.blogspot.com/) if  you want to see all the formatting and hyperlinks intact. The blog is also working again inside the website on this page: (http://www.nmvasculitis.org/Home/events/cnmvf-blog-1). Thanks to Google for fixing that code.)

Hello Friends,

It is not quite the end of the year, but I was asked today to describe the NM Chapter of the Vasculitis Foundation so I was inspired to frame my thoughts about who we are and what we do. I thought it might be good to set some of those thoughts down on this electronic page, and share with all of you what I think we have accomplished and what we hope to accomplish next year.

I have long insisted that the eventual "culture" that our chapter embraces, should include the collective personality of all of its members. We have been growing very slowly so that membership has not reached the sort of critical mass necessary to jump start what I would consider a culture.

We have seen some successful grass roots efforts, and some aborted public efforts. I need your help and the help of your friends and families to do more. It is for this reason, among others, that I welcome and encourage you all to participate at monthly meetings more often, and certainly you can also jump in anytime to share your thoughts in the online forums this chapter has made available to you. You are welcome.


YOU ARE ALREADY CONNECTED
You can already  reach all of the other chapter members anytime you wish by sending mail to the chapter mailing list at "NMVasculitis Google Group". Ask a question, share some news, whatever. But take that first step. Be bold, and tell us what you think. (If you are shy, then at least tell me what you think.)

In 2010, I want to expand our efforts to make it more of a family affair. I encourage you to invite your friends and family to participate in the chapter meetings and also in the chapter mailing list. If they love you, then they will benefit from learning more about vasculitis, and also from the knowledge that participating in awareness events helps YOU both directly and indirectly.

Start today and let's set a goal to be more active in 2010. Perhaps it will be a launching pad to bigger and better things for all of us!

Here are some other things you can expect...


VASCULITIS AWARENESS WEEK 2010
Never forget Vasculitis Awareness Week - April 25 thru May 1, 2010

We need to plan something to do for this. What do you think we should do? There are ideas abound, but one of the simpler ones is to host a walk. Did you ask How? Well, we get a bunch of friends and family, recruit the junior civitan groups, or recruit classrooms at your childrens and grandchildrens schools, call your neighbors, friends from your churches, etc. Do what you can to get as many people as possible involved to join us and make as big a splash as possible.

Someone, maybe me, can find out if and what kind of permit we might need, and arrange that part. The rest is up to you guys to help this become a success. Maybe it will be the First Annual Walk for Vasculitis? Hey, that has a nice ring to it... come on, you know you want to help me do this, right? :o)

The action is simple. Take a walk around the block wearing a TShirt or carrying some Vasculitis Foundation gear, like flags, or banners. Maybe make one big lap around the University, or around downtown. I like the University idea because it is high exposure, and goes right in front of the UNM Hospital where many of our patients go for clinic. What do you think the route should be?

Hey, we could even do this in multiple cities for maximum exposure. Do you hear me in Las Vegas? Do you hear me in Taos? I will help you get the gear. You get your family and friends to join you and lets make it happen next April!

We alert the media we are going to do this, so they put some cameras on it for some coverage during the 5:00 and 10:00 News hours.

At the end, we could end it in a park someplace where everyone would enjoy some kind of picnic. Maybe potluck, or maybe we get this thing sponsored... I don't know and I need your help to figure it all out. Share what you know and give me your ideas. Then even if you don't walk, help recruit people in your personal circles who will walk on your behalf.

We might ask people to buy the TShirts, since that money goes to the VF for funding research, etc.

If we are especially ambitious, perhaps make it a Walk a Thon... How much per mile would you pay to support vasculitis? Would your child's school be willing to participate en mass for community service? How does that work? Do you know? Come to a meeting and lets form a committee to help figure this out. I am ready to go when you are. It can start small, but I bet once the stone is rolling, it will gather some good momentum.


2010 SYMPOSIUM IN LONG BEACH, CA
Also be aware that the 9th International Vasculitis Foundation Symposium is going to be next summer in Long Beach, California . This is the first time it has been held on the West coast, in Long Beach, California. This makes it much easier for those of us in the Southwest to consider going so that is another reason to go so they know we exist!

For more information see:
2010 Vasculitis Symposium set for July 30 - August 1, 2010 | Vasculitis Foundation
http://www.vasculitisfoundation.org/2010vasculitis-symposium

Mark your calendars because this symposium is a TREMENDOUS opportunity to empower yourself with new information, and also foster new relationships with other patients who share your symptoms. Attending one of these symposiums is one of the best things you can do to improve your "life with vasculitis." Learn about treatments directly from the top vasculitis specialists in the world, and also find out what hundreds of other patients are doing. Go if you can. Send someone else if you cannot. This is a big opportunity for you to improve your situation.

You can view some of the presentations from 2008 here:

Vasculitis Foundation
"8th International Vasculitis Foundation Symposium"
http://www.vasculitisfoundation.org/video

2009 CHAPTER "ALMOST" ANNUAL REPORT
I started out with things to come, so here is how things stand right now with our chapter.

We have about 12 "active" patients, who are on my Email list, and have attended at least one meeting. But they do not always attend meetings. I know of a half dozen more who follow the website and blog, but again, are not attending meetings. There are a few others out there who I know are aware of us because of physician referrals, or because I met them at the infusion clinic and personally gave them a brochure and card, but they have not made contact or come to a meeting.


HOW MANY MORE ARE OUT THERE?
New Mexico has a little over 2 million people, so statistically, there should be how many patients in that size of population? I do not know. What might the predicted breakdown of diagnoses be? I do not know.

I have no idea how large our target audience is other than the somewhat vague guess I can make based on the radius spreadsheet I got from the VF a while back. But that is not based on an empirical number. I think the real number of patients is more likely going to be a reasonably predicted as a smaller statistical variance of the national vasculitis trends.  I would sure be interested to know these numbers. Would you?

Does the national office have this kind of information published? Is it already included in some of the information I already have? While planning for my 2010 goal setting, I need to go look again at the Chapter Handbook, the Awareness Handbook, etc, and hit the Internet to find any statistics that shed more light on who these unknown patients are, so I can try to get the message to them more effectively.  If you find more information, please send it to me or send it to the group list.

It is a quiet kind of service we provide. I meet a new patient about one every third month, then they sort of fade away for a while. I see them online in Facebook, or by Email, but face to face meetings are more rare, in spite of dedication to host a monthly meeting. Speaking of which...


MONTHLY MEETINGS CONTINUE
I believe that monthly meeting is effective because that meeting is where I meet new patients.

Every month, on the third Thursday, at 6PM, we have a meeting. I will be there. Usually my daughter is there, and often there may be someone else there. Even though attendance can be hit or miss, the concept of holding a regular meeting, at a regular time so people can depend on it, is a good one. Why don't you come and keep me company and catch me up on how you are doing? I will be waiting for you next time at McAllisters Deli in Uptown Shopping Mall, at 6PM on December 17th. Come have a glass of sweet tea, or a piece of pie. Or just a glass of water and conversation. No matter. Just come.

Currently, we are shopping around for a new meeting place, so the monthly meeting can move from one month to the next. Details about the location are always announced on the NMVasculitis Meetings page of the website, and in the NMVasculitis blog, (which you may be reading now if you like to click on the links) and in the NMVasculitis mailing list, and even in the NMVasculitis Calendar. Soooo... you know where to go to find out where we will be.


WEBSITE, BLOG and MAILING LIST
The website and blog, which I just mentioned are also effective, because I sometimes get feedback from some of you by Email after a particularly useful post in the website or blog. The more remote patients especially find this useful since attending a meeting is really tough. Lets all get more active in sharing what we know. You see things in the media, your doctors tells you things, you know things from personal experience. Share what you know and lets all benefit from the collective intelligence we can provide to one another.


WHO ARE WE?
I support patients who live all over NM, mostly from Albuquerque, but also as far away as Las Vegas, NM (123 miles) and Taos (132 miles). Not so many from the southern part of the state, but I do not think they even know this chapter exists yet. I even get contacted by people from other states as far away as Florida. That is more rare, but it happens. I pass them on to a local chapter if I can find one.


HOW DO PEOPLE LEARN ABOUT THIS CHAPTER?
Most often new patients come to me because of a referral from the VF office, or the Mayo Clinic nurses refer them after visiting your support pages, etc. Occasionally, they have heard of our monthly meeting through word of mouth, so that is a hopeful sign that we are starting to gain awareness and recognition. Part of my goal in 2010 is to get better organized with public relations efforts so we can get some media attention. I have not been as aggressive about that as I could.


2009 MAKE-A-WISH NM RECIPIENT IS A VASCULITIS PATIENT
One opportunity to foster awareness is coming up just after Christmas. Meaghan Carpenter has Churg-Strauss Syndrome vasculitis.


You may already be aware that Meaghan is one of the 2009 Make-A-Wish recipients in New Mexico. You may not be aware she is also the only Make-A-Wish recipient in the entire country this year for whom an international travel wish has been granted thanks to a generous donation by Monogram Travel, an international travel company.

Just after Christmas, Make-A-Wish Foundation NM will send her to visit the original "100 Aker Wood" at Ashdown Forest in the county of East Sussex, England. Ashdown Forest is famous as the setting for the Winnie-the-Pooh stories, written by A. A. Milne for his son Christopher Robin Milne. The first book, Winnie-the-Pooh, was published in 1926 with illustrations by EH Shepard.

Winnie the Pooh is sort of Meaghan's totem because of another book based on the character. The wisdom offered in the book, "The Tao of Pooh," by Benjamin Hoff, gave Meaghan the courage to accept the diagnosis of her chronic illness at age 15 with courage and more grace than many might have done under similar conditions. She will also get to see Shakespeare's Globe Theatre and some other sights in London, England. It is beyond imagining how looking forward to this generous gift of a wish has helped to boost her outlook through some tough times over the past year.

Both Meaghan and I will report on this wish experience and I hope to see news of it serve the purpose of increased Vasculitis Awareness.


MEDICAL INFORMATION KITS ARE AVAILABLE FOR YOUR DOCTOR
In 2009, the Vasculitis Foundation arranged with several medical experts to create Medical Information Kits. This is the kind of information only a doctor would be able to understand and use, but the point is it is a big help to jump start any doctor who might not understand your condition.

I would ideally like to arrange for every doctor who treats a vasculitis patient to get a medical information kit sent to them directly from the VF. That is one of my awareness goals for 2010. You can help by telling me about your various doctors: especially their names, addresses, phone numbers, etc, so I can make this happen. You benefit immediately, because once your doctors are better educated about your condition, they will be better able to treat your condition.

I am also privately interested in your feedback about your doctors, but I would not share that publicly. Just knowing who has been naughty or nice to you helps inform my referrals to other new patients. Referring new patients to competent doctors is one of the best things we can do for them to see they get the treatment they need. So I need you to tell on your doctors.


Tell us about your doctors now:

NM Vasculitis Doctors (NMVasculitis.org) 
http://www.nmvasculitis.org/Home/support/nm-vasculitis-doctors/nm-vasculitis-doctors

HEALTH FAIRS -- "JUST DO IT" IN 2010 (or maybe 2011)
Another example of public awareness is one boat for which we missed the deadline due to a slow start and an absence of funding. That would be the annual KOB Health Fair New Mexico coming up in January 2010. This health expo exposes about 10,000 visitors to the message, and it is an opportunity to sell or give away awareness items. This event is hosted every year by KOB 4 News, one of our television news stations, and would seem to be a bonanza opportunity to expand awareness. We must absolutely prioritize showing up at events like that if we want to get on the NM Nonprofit awareness map.


It would be a cinch to get a booth. Just pay the $600 fee, and recruit warm bodies to man the booth for two days. I can get a box of brochures from VF National in a heartbeat and we can make up something to decorate the booth creatively. That is all in principle.

What I am finding in practice is that I must push it forward, then hope that the "Popularity Factor" will make more people want to join in and help out. Not only patients, but also family and friends. It will also help to get an earlier start next time.

The one person who immediately volunteered this year is not a patient and her vasculitis friend actually lives in another state. I know more of you would probably join in efforts like this if I do a better job getting things organized sooner. I am learning on the job and I welcome your help.

Your Ticket to a Healthier Life!
You can be a part of the largest and most comprehensive Health Fair in New Mexico. We saw some 10,000 health-conscience New Mexicans attend the 2009 Eyewitness New 4 Health Fair and we are already expanding for 2010.
Our show hours are:
Saturday, January 23, 2010   9:00 a.m. - 5:00 p.m.
  Sunday, January 24, 2010   9:00 a.m. - 4:00 p.m.
Lujan Exhibit Hall at Expo New Mexico (State Fairgrounds)

At a minimum, ANYTIME you hear of an event like this, do let me know ASAP.

As a Plan B, I intend to go to the 2010 KOB Health Fair NM as an attendee, and chat up anyone I can find about the local VF chapter, the national Vasculitis Foundation, and in general spread awareness through sheer determination. Why don't you do the same and perhaps together we can make some contacts that will help us get better organized into 2010 and beyond.


SPONSOR A YOUTH SPORTS TEAM AND NAME THE TEAM

I coach youth sports all the time, and it just occurred to me that I could leverage this exposure to crowds by getting a team sponsor. Then customizing the jersey with a team name like... what would you call a team that was related to vasculitis?

• The Blood Cells
• NMVASCULITIS
• The Eosinophils
• The Prednisones
• The Pred-Ni-Zone
• 
  

Awkward!! I lack the requisite looseness of mind to do this right now. Send me your ideas about naming a Vasculitis Mascot and maybe you will see it applied to a TShirt or Jersey for a sports team at a field or court near you. People will ask what it means, and you can tell them a story... That is how it works.


FRUITS OF YOUR AWARENESS EFFORTS INCLUDE HELPING MORE PEOPLE
You may have sensed that one of my themes for 2010 is going to be reaching our more to patients, and also to friends and families of vasculitis patients with a secondary purpose of asking them to participate. I wonder sometimes if there are more patients and families out there we could help if only they were aware that help exists. Without an active membership, it is very challenging to even imaging expanding these efforts by myself. But I do it anyway. Am I stupid, or just stubborn? I choose to believe the latter, and keep counting the times I have shared information with people which they say helped improve their situation, and at least let them know they are not alone. Spreading awareness can be as simple as having a conversation.



MORE FUN in 2010
Going into 2010, I am also increasingly mindful now of trying to organize more fun things to do that are not necessarily "vasculitis related," but would inspire people to WANT to attend. Instead of "Come meet me to talk about vasculitis" it would be "Come to this great fun event." Then once they are present, they get exposed to the VF message anyway. Sort of a softer approach. Less serious, but more likely to attract attendance... Like attending a movie, negotiating two for one meal discounts, or even playing Putt Putt Golf. Concerts at the Zoo as a group... Whatever people would like to do, I am open to try.


DECORATING MY TRUCK
I am considering getting a sign made for my truck (which is coincidentally already painted red) to advertise NMVasculitis... How about that? Do you think it is a good idea? Would you put a sign on your car? How about a bumper sticker? What do you think such a sign should say?


INSPIRATION IN THE MEDIA
The upcoming television special on Discovery Health regarding Mystery Diagnosis is inspirational in terms of encouraging one to aim high. Did you know some of that footage was produced by other vasculitis patients? Talk about taking control of your situation! You can watch this next Monday:

Event: Watch "Mystery Diagnosis"
What: Lecture
Start Time: Monday, December 7 at 10:00pm
End Time: Monday, December 7 at 11:00pm
Where: Your living room on the Discovery Channel

Discovery Health :: TV Listings :: Mystery Diagnosis
http://health.discovery.com/tv-schedules/series.html?paid=62.14341.120601.29206.x

Summary:
Mystery Diagnosis
The Boy with the Strange Stare
In 2006 DeAnna and Jonathan Withrow's son Landyn is born; but when they hold him for the first time, they notice his gaze is fixed on the ceiling. In March of 2004 Cyndi Webber notices a bruise on her leg that will not disappear.

Note: Cyndi Webber has MPA vasculitis. They may also make this episode available later as a video podcast.


I am inspired to make more efforts to reach out to our New Mexico media next year, while also keeping up the grass roots methods I have in place now. Part of that is basic boots on the ground stuff like writing more press releases, and arranging for interviews with whoever will listen.

We had a mild attempt at this before from one of our local patients, Karla Kollasch, and arranged by Carlene Hobbs. Karla got about ten seconds of drive time air on 770 KKOB with Steve Villanucci. It turned out to be a less than idea venue, and the exposure was more limited than it could have been.

Getting on a morning talk show like Good Morning New Mexico, or getting on the radio again with a more dedicated interview would be great. Who will join me to make it happen? I will need a patient and/or perhaps a doctor to speak to give it legitimacy. Keep this in mind and lets find out if we can arrange for some exposure.


VF MEMBERSHIP HAS BENEFITS SO JOIN OR RENEW TODAY
I have always put new patients in touch with Shannon Morgan, the Vasculitis Foundation New Patient Coodinator and vice versa, so they should be hopefully be getting to the Vasculitis Foundation on a national level. That brings advantages in terms of getting information from VF that I cannot provide by myself. Mine is actually due now, so I should set the example and take care of that now.

Come to a meeting and I can get you a form, or go online to:

Membership Renewal, US | Vasculitis Foundation
http://www.vasculitisfoundation.org/node/206

or

Membership Renewal, International | Vasculitis Foundation
http://www.vasculitisfoundation.org/node/207

CONCLUSION
I am sharing these thoughts now to let you know some of what I am planning, and also maybe, hopefully, to inspire you to participate more this coming year in the growth of the NMVasculitis Chapter and in planning and executing awareness and education efforts. Several of you have expressed the best intentions and even a willingness to help. Now just do it.

This thing we call Life is a busy thing, and we all need to take it one day at a time. Especially when encumbered with a chronic illness and other family and business concerns. Even so, please make one of those steps this next year in favor of promoting Vasculitis Awareness.

Remember always that Awareness ultimately leads indirectly to research dollars, so go ahead and be selfish by promoting awareness. Help us make more people aware of this condition and aware of the local support options this chapter provides.

Keeping it real, I hope to see you on December 17th at McAllisters Deli in Uptown, or in the Google Group mailing list! If you find news we can use, write it up and send it to me and I will post it in the blog and or on the website. Your contributions are welcome!

Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010 when we all come together for a single purpose -- to raise awareness.
https://www.vasculitisfoundation.org/teamvasculitis

The Gifts of Vasculitis by Lynn Corwin

This is a remarkable example of the power of perspective. I reprint it here in case you have not yet seen it. - JWC

Cleveland Ohio Vasculitis Foundation Chapter - The Gifts of Vasculitis by Lynn Corwin
Original article can be found here

The Gifts of Vasculitis
by Lynn Corwin

Vasculitis has given me so much more than it has taken from me. Let me explain.

I have a new appreciation for life that I didn’t have before. Every day is more meaningful because I realize how important every single day really is. We all have a finite amount of days to live; we are all going to die someday. Being diagnosed with vasculitis forced me to think about the fact that I might not live forever, which is sort of what I offhandedly thought. I see now that each new day that I wake up on the correct side of the grass is a good day. No matter how difficult things have been, or how concerned I am with the many negative things going on in my life…each new day holds promise. And I try to concentrate on what is going right in my life. I love each and every morning. What a gift!

I have a new kind of empathy and compassion that I didn’t have before. I never stopped to realize that sometimes people that look perfectly healthy are not. There are things wrong with many of us that do not show. If someone had a broken leg or a skin disease, I could certainly sympathize because I could see what was wrong. But now I know that some of the people that look the best have the most problems. I now care about all the difficulties people are having, not just the troubles I can “see”. I feel that I have a deeper understanding, and that “everyone is fighting some kind of battle”. So I try to be kind to everyone I meet. Having vasculitis has given me this beautiful gift of compassion which has made me a better person than I ever was. What a gift!

I have made some wonderful friends that I never would have known had I not had vasculitis. When I think of how empty my life would be without Shannon, Jane, Heather, Robert, Mark, and so many others, I realize that these “vasculitis friends” are such a blessing. If I had been healthy, I wouldn’t have met (online or in person) some of the loveliest, kindest, caring people all over the world. These people have supported me and enriched my life beyond measure, and they are my true blessings. What a gift!

And some of these wonderful new friends are people who have lost a loved one to vasculitis. Somehow I find the words to comfort them and guide them towards working for the cause to honor their loved one. These people live in agony, yet I have helped them to live with their pain. Before vasculitis, I couldn’t and wouldn’t have known what to say. I would have just turned a blind eye to their suffering. Now I can help them walk the walk. What a gift!

I have learned to accept myself and other people in a non-judgmental way. I have accepted my own unattractive physical changes due to vasculitis, which has raised my self-esteem considerably. It’s what’s inside of me that defines who I am. Before vasculitis, I put a great value on “looks”. I know we are in a world filled with all kinds of people, and I respect them all. I no longer have to be right all the time, nor does everyone have to do things my way in order to get them done properly. I am so much more laid back and likeable than I was before vasculitis came knocking at my door. I accept my own and other peoples’ faults and philosophies with a kindness I never knew I had. (probably because I didn’t have it before) What a gift!

I now know that people are dying and crippled because they didn’t get their vasculitis diagnosed in a timely manner…reason being, most medical people don’t know anything about vasculitis, although I have encountered some unbelievable doctors and allied medical personnel specializing in vasculitis who have helped me tremendously on my journey. So I have made it my mission to raise awareness of this disease in the medical and lay arenas. It has become a full-time job for me; a labor of love. I’ve never done anything particularly memorable in my life until now, and I feel I am really helping and making a difference in the lives of those who are affected by vasculitis. It is a warm and wonderful feeling. What a gift!

So the bottom line is – I have an incurable disease that has presented me with both challenges and opportunities. Vasculitis has given me so much more than it has taken from me…what a gift!

"Lucy in the Sky With Diamonds" gives exclusive interview

A friend sent me this article and I thought you might like to read it. I can't help but wonder if Lucy would have been diagnosed much earlier if she lived in the US and had access to our medical care system.

Carlene

Lucy, the girl with kaleidoscope eyes who inspired the Beatles... and her final, tragic battle.

Remember the song, "Lucy in the Sky With Diamonds". People always thought the Beatles wrote this song when they were all tripped out with LSD, but I had heard the story that it was from a picture that John Lennon's kid brought home from school. Interesting story about Lucy.

http://wwwdailymail.co.uk/health/chat/article-1217848/Lucy-girl-kaleidoscope-eyes-inspired-Beatles--final-tragic-battle.html

Here's the article, for your convenience:

Lucy, the girl with kaleidoscope eyes who inspired the Beatles... and her final, tragic battle
By Bonnie Estridge
Last updated at 9:43 PM on 03rd October 2009
 
The woman who opened the front door had taken a while to get there. Although Lucy Vodden was clearly frail beyond her years, her hair sparse and face puffy from medication, when she smiled it was easy to see the happy little girl that she once was - the little girl who ran around with Julian Lennon at nursery school. 
Lucy was only 46 years old when she died last week from an infection that was a complication of lupus, the disease she had courageously battled for 15 years. 
Housebound and extremely unwell, it happened after she had mustered up the energy to enjoy the first break she and her husband Ross, an environmental health officer, had taken in eight years. 
 
Tragic: Lucy Vodden died last week aged 46
 
John Lennon in 1964, before he penned the famous hit inspired by Lucy
She gave her interview to The Mail on Sunday in a bid to publicise the autoimmune disease that, in her case, had taken so long to diagnose and so subsequently had been harder for doctors to treat. 
Visibly exhausted, Lucy was determined to finish the interview so that others would learn from her experience the importance of early diagnosis. 
She had made the news earlier this year when it was revealed that she was the 'Lucy' in John Lennon's classic song Lucy In The Sky With Diamonds. 
His four-year-old son Julian had drawn a magical picture of his playmate surrounded by sparkling stars while at Heath House nursery school in Weybridge, Surrey, and when he told his father his picture's title, John was obviously inspired. 
'I don't know why I called it that,' Julian said later, 'but I obviously had an affection for Lucy. I used to show Dad everything I'd built or painted at school and this one sparked off the idea for a song.' 
And while Julian grew up to be a singer and songwriter and now lives in France, and Lucy trained as a special needs nursery teacher and worked with autistic children in Surbiton, they kept in touch. 
Lucy, however, would endure a life dogged by years of unexplained ill health that cut short her career and robbed her of a chance to become a mother. 
'I feel permanently exhausted,' she told me. 'Any activity - such as emptying the dishwasher - feels as if it has caused my temperature to shoot up. The steroids make me bloated and some days I am completely swollen. I usually don't get depressed and I keep coping but it's difficult because I've always cared about my appearance. 
'I found it very hard having the spotlight on me recently. But if something good can come out of the publicity - if it can raise awareness so that any sufferers may get diagnosed earlier - then I'll be happy.' 
For it was only five years ago that Lucy finally found out why she had been sick for so long, and was diagnosed with lupus. 
Lupus is common and affects one in 1,000 people in the UK, mainly women between the ages of 15 and 50. 
The condition often remains undiagnosed or is mistaken for ME (Chronic Fatigue Syndrome), rheumatoid arthritis or MS. 
But delay in diagnosis is serious, as lupus can affect any part of the body and major organs can be damaged irreversibly before treatment has been started. 
In lupus (the Latin word for wolf, from one of the tell-tale signs, a butterfly-shaped facial rash once thought to resemble a wolf's bite) the immune system attacks the body and can cause damage to the kidneys, brain, heart and lungs. 
While incurable, if treated early there is a good chance that it will go into remission, lessening the risk of future complications. 
After her diagnosis, Lucy remembered the day that a large bouquet of flowers arrived at her home in Surbiton. They were from Julian who, when he heard that his 'girl with kaleidoscope eyes' was ill, sent her garden centre gift vouchers as she loved growing plants and took much solace in her garden. 
'It was lovely that Julian sent such a sweet note saying how sorry he was to hear I was ill. It really cheered me up,' she said, beaming at the memory. 
'My illness has had an effect on my memory but I still vividly remember Kenwood, the Lennon house at St George's Hill in Weybridge where there was a lovely swimming pool. 
 
Inspiration: The young Lucy
'As children, Julian and I ran around like mad things most of the time, he was full of fun and always smiling when we were at our nursery school. 
'I remember him bringing an enormous teddy bear into class and then refusing to take it home - so I brought my panda in to keep it company. 
'His mum Cynthia was stunning and I remember thinking how lovely her hair was,' she said, 'but I also remember being scared of John, although I have no idea why. Maybe it was because he was so famous. 
'When The Beatles' Sergeant Pepper album came out I remember that I preferred the track Good Morning with the sound of the cockerel crowing to Lucy In The Sky With Diamonds. In fact, when I first saw that now famous picture - which is supposed to be worth about £250,000 - I thought I looked like an alien! 
'I can't remember Julian drawing me. I don't know where the picture is now - I heard that a record company boss had it in his office but that may be just hearsay. 
'The last time I saw Julian was when we were in our early 20s and he asked me, "So how's Lucy in the sky getting on?"' 
As it turned out - not well. Lucy had started to suffer from a chronic inflammatory skin disorder, diagnosed as psoriasis. 
'In 1994, two years before I married Ross, I developed itching, scaling and very painful skin,' she said. 'It has a genetic component and there was psoriasis on both sides of my family, yet I seemed to have it particularly badly. 
'It is a chronic condition, which does relapse, but I was in and out of hospital. Eventually I had to give up my job, which was heartbreaking.' 
Lucy then faced another dilemma. The immuno-suppressives needed to treat the psoriasis have been linked with birth defects. Because she and Ross had 'always dreamed of having children', Lucy chose not to take the drugs, instead bravely putting up with the psoriasis until suddenly, in 2001, she went into remission. 
'I felt much better for the first time in years,' she said, 'and we wanted to start a family so I talked to a gynaecologist at my local hospital in Kingston upon Thames about having fertility treatment. He said my ovaries would need to be "fired up" with the hormone oestrogen due to my age and health problems.' 
She was thrilled to become pregnant within months but miscarried before her first scan at 12 weeks. 
'Afterwards I felt very strange, as though I had constant flu,' she sighed. 'My joints ached, I felt weak and tired all the time. 
'I later learned that the worst thing you can do to someone with undiagnosed lupus is to give them oestrogen because the hormone can trigger the disease but, of course, at the time no one realised I had it.' 
What Lucy was also unaware of was that she was suffering from antiphosopholipid syndrome, also known as Hughes syndrome, a condition that can be a complication of lupus. 
Her symptoms prompted her GP to send her to Professor Graham Hughes, head of The London Lupus Centre (www.thelondonlupuscentre.co.uk), who gave her the diagnosis of lupus. It was Prof Hughes who had discovered the link between lupus and sticky blood syndrome in 1983. 
He put Lucy on a course of steroids which worked incredibly quickly. 'I felt fantastic because the crippling tiredness disappeared,' she said. 
'I could clean the house, I was bounding with energy - but unfortunately this new lease of life only lasted for four weeks and then I developed a rash on my face, my hair started falling out and my joints swelled. 
'The steroids had been masking what was really going on in my body. I became a recluse because I didn't want people to see me looking so ill.' 
 
Drawn together: Julian Lennon as a toddler with parents John and Cynthia
Lucy decided having children was now out of the question. Having Hughes syndrome meant she had an increased tendency to form clots in blood vessels (thromboses) and her blood would be far thicker and stickier than was recommended for a healthy pregnancy. 
'This is why so many women with the disease have multiple miscarriages,' Lucy said. 
'Prof Hughes told me that a number of lupus sufferers had no idea that they had the disease because their symptoms may have been in the early stages - as mine were - and had gone undiagnosed.' Lucy paused. 
'In the end I felt it was too dangerous to try for children,' she said. 'Ross and I would have happily adopted or fostered but my health was far too fragile.' 
Prof Hughes says: 'So much has changed in the treatment of lupus that the majority of patients are able to lead a perfectly normal, active life and live a normal lifespan. 
'Lupus tends to arise in families where there are other autoimmune disorders, such as thyroid problems or coeliac disease, but the female immune system appears to be more susceptible than the male. 
'In some patients lupus is so mild that no medication is needed and in others everyday anti-inflammatory drugs give control. For others, steroids are prescribed and nonsteroidal drugs are also proving effective in controlling the illness. But a few patients need anti-cancer [chemotherapy] drugs to manage their condition.' 
Prof Hughes wants to raise awareness about lupus and says there are clinical pointers that could lead to an early diagnosis, using simple blood tests. 
'If, say, a 20-year-old female presented with prolonged fatigue or what they might describe as prolonged glandular fever, then this could make us sufficiently suspicious to test for lupus.' 
About one-in-five lupus patients also suffers from a tendency to excess blood clotting or Hughes syndrome. This can affect any organ, though the brain and, in pregnancy, the placenta are particularly vulnerable. 
'Thus headaches ,especially migraine, memory problems and balance difficulties are common complaints,' says Prof Hughes. 
'Hughes syndrome is the most common treatable cause of recurrent miscarriage. I would test any woman who has suffered two or more miscarriages: a simple blood test could prevent so much more tragedy.' 
Although it was too late for Lucy to become a mother, Prof Hughes gives hope to other women. 
'We have come a long way,' he says. 'The pregnancy success rate in Hughes syndrome has increased from 15 per cent 20 years ago, to more than 90 per cent today.' 
And sufferers will always be so grateful to Lucy. She raised the profile of this disease - not for herself, but simply to help others. 
 
Lucy in the sky: The now famous - and valuable - picture Julian Lennon painted of his nursery school playmate
Symptoms to watch out for 
Lupus can be triggered by hormonal changes such as puberty, the Pill and pregnancy. Sunlight, trauma or a prolonged course of some medications may also activate it. 
There may be a genetic link  -  lupus is often triggered in those where there is a family history of the disease and/or other immune system illnesses such as arthritis, MS and rheumatism. 
Anyone with suspected lupus should have blood tests. 
Symptoms include: joint/muscle aches and pains; a rash over the cheeks; extreme fatigue and weakness; rashes from sunlight; flu-like symptoms; headaches/ migraines; kidney problems; hair loss; swollen glands. 
Hughes syndrome is characterised by recurrent miscarriage, headaches and a tendency to blood clots (eg, DVT). 
 
www.hughes-syndrome.org.uk; www.lupusuk.org.uk; www.lupus.org.uk
 

October 2009 Chapter News

OCTOBER 2009 Chapter Meeting News
18:00 Thursday, October 15, 2009

This newsletter available by Email, but is best viewed with formatting intact here:
http://nmvasculitis.blogspot.com/

In attendance and having fun:
Joseph Carpenter (caregiver)
Meaghan Carpenter (patient)

RSVP:
Karla Kollasch (patient) travelling tomorrow, may make it in November

Special mention:
Carlene Hobbs (friend of patient) for posting a meaningful article to the NMVasculitis Google Group.

That article is good enough I may repost it in this blog.
If you get a second copy, just know I am also sharing it with others.

WHERE WOULD YOU LIKE TO GO NEXT MONTH?

If you are thinking of coming to a monthly meeting, you can influence the choice about where we meet. Send Email to Joseph. Let me know what you like to do, and we can go there. Just so long as we increase the public awareness about vasculitis, and get to know each other, I am open to most suggestions.

**ooOO Yes, Master, we can go to Hawaii
and have a luau on a moonlit beach at night... OOoo**

What? Huh? Did you say something? :o)

HERE WE ARE AT CALIFORNIA PIZZA KITCHEN (CPK)

Meaghan is off and running with her second root beer and she plans to order the Four Cheese Ravioli, which is a new menu item: Ravioli with fine herbs, imported Asiago, Mascarpone, Ricotta and Parmesan cheeses sautéed in a creamy Pomodoro sauce with fresh basil. Add sautéed mushrooms. Menu She was wanting italian for her birthday dinner, so that fits.

I am going for the Miso Seafood Salad. This is a great combination of shredded Napa cabbage with fresh avocado, julienne cucumbers, daikon, edamame, carrots, red cabbage, green onions, cilantro, crispy rice noodles and crisp wontons tossed in a Miso dressing and topped with blue crab and shrimp. Also available with chilled-grilled chicken instead of seafood. Menu

Are you drooling yet? I nearly was after we ordered.

MOBILIZING THE STUDENT BODY

Earlier this month, Meaghan spoke to the faculty sponsor for Junior Civitan at her school about organizing awareness events. Just in general terms, but they are open and welcome the idea. Her school has a history of encouraging community involvement so this action is overdue.

I have long held the opinion that along with celebrities, students have perhaps the best chance at getting things done because they are connected to a larger community at school that most adults. Their friends represent an available work force that will usually work for food, and that is priceless.

If only there was a better way to encourage and motivate these young people to join the cause and inspire them to help spread the word. We have to learn how to be hip and spread VF Awareness like a viral YouTube video.

HALLOWEEN IDEA

Do you have kids? Grandkids? Would you consider putting them in a Vasculitis Foundation T-Shirt for Halloween trick or treat? That message would get seen by everyone in the neighborhood and might spark a few conversations by itself, even if you never talk to a soul.

Boo!

WISH YOU WERE HERE

This meeting was more like a dinner, but we did discuss awareness ideas.

We have these meetings every month with the commitment that if you build it, they will come. The model has proven true a few times when we were fortunate to make friends with a few patients and caregivers over the past year. This is similar for me to other time when I have organized non-profit social events in the past. The basic idea is just keep going at the same time so people know you are reliably going to be there. Once you become a calendar event, eventually some people will make it a regular thing.

In Albuquerque, this has proven true in the months when we did have attendees. We have had wonderfully productive meetings, if you define productivity as sharing knowledge about vasculitis and basically just the knowledge that even with a rare disease, you need never be totally alone.

I believe they found our previous location was unappealing, or perhaps less attractive geographically, so that is why we are moving the meeting around a bit to more popular spots in hopes of catching peoples attention. I have also been speaking to location managers about sponsoring incentives, but since our membership is so reticent to actively participate, or are busy with other things, or have transportation issues, then we are faced with the challenge of figuring out the right combination of location and other factors to create an atmosphere that will attract people to come out of hiding more often.

I just flashed on another idea. I should look up a list of retirement homes. The nurse will know the diagnosis of most of the residents, so I can discretely request if there are any vasculitis patients. Then if there are any, we can offer to come speak to them. So many ideas, so little of me to go around. Would you like to help? Please let me know.

RECRUITING FAMILY & FRIENDS

Going forward, I made another decision today. I have been hesitant to impose on close relationships for fear of burning them out, but now I feel I may have gotten it backwards. I do not need them to do anything except show up and be friendly. They are inclined to do that with each other anyway, so... As a means of gaining more good company at these meetings, I am beginning today to invite friends, family, and whoever I meet that shows any interest of any kind to attend our monthly meeting. That meeting is really mostly a social event after all. Not a medical seminar.

---

Though I hope we do have some of those in our future.
I know some docs who are willing to come to a meeting and speak to you,
if you let me know you will come.

---

The bottom line is to eat, drink and be merry. I want our organization to espouse the notion that especially with a rare disorder like vasculitis, people should be encouraged to enjoy life.

Though rare, there are others out there with vasculitis, and they do not congregate naturally.

Like you, they are shy to be early joiners, so by beefing the numbers with family, we might also attract more diagnosed members to our "chapter family." This chapter was founded by Karla and myself on the notion that New Mexico vasculitis patients and their families might be able to offer each other needed support. So, from now on families are invited and encouraged to attend.

If you plan to bring a large group, let me know so I can plan accordingly.

As a way of putting thoughts into action, I spoke to my brother today. He has six kids. It is like having a smallish army at your disposal. I imagine outfitting all of them with VF TShirts and going places. That is without a doubt going to attract some attention. I think we will be giving custom designed Vasculitis T-Shirts as gifts this year. Hmmm... Reminder to self. Self, double-check with VF office about copyright use on VF logos, etc.

HEY, WHAT ABOUT THAT GOOGLE GROUP?

I have reserved membership in that group to only NM membership. The philosophy behind that was to encourage you to be open with your stories because you would know that only local members would see those Email messages. However, that is not how it is working out. You guys do not post much, nor do you reply to posts.

Soooo... I will sit on this for a bit, but I am considering opening that group up to regional or even national membership, so long as the person applying is confirmed as a patient of caregiver. If I do that, then we will see more activity in there for sure, and perhaps you will be encouraged to participate more yourselves. Any responses? Ideas? I am not down on anyone here. I just want to stir the pot a bit and get things moving.

I know you have things to say. You are human beings with intelligence and emotions. Share what you know, and who you are. You are not alone, and others will benefit from your experiences.

---

Hint: Please share your own stories and ideas so I can include them
with monthly chapter updates. Send me Email!
You can post yourself, or at your request,
or I can quote you anonymously.
Just please let us know how you are doing.

---

MOVING THE MEETINGS

Now that we are moving the meetings around to do more fun things, I hope you will join us. Keep an eye on the Meetings page, because the meeting locations have become a moving target. We are not hard to find, but you will have to check the website to know for sure where we are going each month.

For example, I watched a movie yesterday called Nick & Nora's Infinite Playlist. One of the through lines of the story showed this young couple and their friends in search of a popular band that was going to play in a mystery location. Part of the suspense of the movie was watching them figure out where to go. I do not want our chapter meetings to be hard to find, or to involve wild goose chases, but the settings also should not be boring. Miniature Golf anyone? How about a picnic? Talk to me and let me know what you would like to do.

We are about ready to leave CPK. Meaghan and I loved our dinners. They were both tasty and filling. We also went all out and ordered dessert. We shared a single helping of Chocolate Soufflé Cake. A Belgian chocolate soufflé cake, served warm with CPK's triple-thick hot fudge on vanilla bean sauce. Also available à la Haagen-Dazs. Menu

This was Meaghan's birthday dinner, so we went full out with a nice dinner, sodas and also dessert. That was not free.

People should keep in mind that at an average meeting, we sometimes eat a meal, and sometimes just have coffee and perhaps dessert. It does not have to be expensive. I always like to choose places where people in attendance can order just dessert, or a full dinner. The menu here is as varies as most places. It is not the cheapest, but it is my intention that cost should not become an issue.

Come and drink water if you like. I will keep the wait person happy
with my innate charm and Meaghan with her good looks.

When considering CPK, one has to consider the time of day. CPK is so busy now that it is possible other people might actually come to our meeting and not known how to find us.

GETTING ATTENTION

We have the VF logo displayed, but unless someone knows who or what to look for, it is not so obvious what we are about. [I am suddenly imagining using a helium tank to take better advantage of the VF balloons by actually inflating them so they float. Prettiful!]

The entire point of doing this is to see and also to be seen by others, so I will have to work up some kind of sign that stands out the table, or something to draw more attention to our meetings without becoming carnivalesque.

T-SHIRTS FOR AWARENESS IDEAS

Meaghan has a certain slogan that she wants to put on a T-Shirt. I do not want to share it now, because she plans to go to the mall have have a shirt made. I will share a photo later.

This got me to thinking... again. This may sound obvious, but I recall conversations with "several unnamed people" who agree that the Vasculitis Foundation T-shirts are nice, but kind of boring. they appeal to patients, but not to the general public. They are full of the message, but do not have the aesthetic appeal that will motivate people to want to wear them around town.

I for one wear a rather large and very tall size. I am seven feet tall. The point is none of the VF shirts will ever fit me, so I am destined to custom order one or make one, any way. Why not something really cool and original? Maybe I will emulate my daughter, and discover some expression that shares a positive spin, or in her case an ironic one, about who I am in relation to vasculitis.

In my minds eye, I can see these T-shirts sold at any department store. I have seen the result of consignment deals brokered on behalf of the American Heart Association and anyone with eyes and a credit card knows that Breast Cancer is certainly not pulling any punches marketing those pink ribbons all over the place. Wherever they go, we should follow, because they are everywhere. So too should we be.

Someone at the national level should broker a similar mutual benefit deal where the corporate partners are provided inherent incentives to carry the distribution costs of a given awareness program in exchange for good guy visibility, and a slice of some profit. Make is sale-worthy, and they will go for it. Thinking beyond T-Shirts, the designs have to be cool enough to sell for anything good to happen.

Consequently, I think the collective WE who make up the inside world of vasculitis patients and caregivers should create or solicit cool designs for VF T-shirts and other items that teenagers, and others, will want to buy and wear regardless of their personal affiliation with vasculitis. Red is a great base color, but lets not be limited. Plus, "cause" shirts, posters, buttons, stickers, are very popular with all ages. People like to wear the cause and be seen caring. Who cares how ironic it all is, so long as the message is spread and the dollars end up going to research?

Perhaps a national or international T-shirt design contest would be fun? Some Email and a few creative web pages on would be cheap to manage and go a long way towards starting this thing up. I think will send this to the VF head office and to the board of directors as a suggestion. Maybe they already have a plan? Who knows?

SIDEBAR ABOUT A DOMAIN NAME CURRENTLY TRAPPED IN NORWAY

Speaking of VF, has anyone tried to politely reach the lessor of the domain VF.ORG to see if it might be available? It is currently registered to Karl Oskar in Narvik, Norway but there is no website published. Maybe it is just sitting there unused and could be coaxed into service for the VF awareness efforts?

Whois contact data:
Admin ID:MONIKER1788507
Admin Name:Karl-Oskar
Admin Organization:Filter Visual DA
Admin Street1:Dronningensgate 29
Admin Street2:co/Karl-Oskar Fosshaug
Admin Street3:
Admin City:Narvik
Admin State/Province:Narvik
Admin Postal Code:NO-8514
Admin Country:NO
Admin Phone:+47.90123466
Admin Phone Ext.:
Admin FAX:
Admin FAX Ext.:
Admin *******@rl-oskar.no

TWITTER IS COMING SOON TO A WEB SITE NEAR YOU

I use Twitter to update my coaching web site, and it is great for posting last minute news. It is something I use sparingly, but what it really great about it is I do not need to be anywhere near a computer to post an update. I can simply text that in, and it gets displayed in the site. So, I think I will add that to the NMVasculitis.org site as well. Should be useful when we are having an event.

If you start participating actively,
I might even let you post to Twitter as well...
Can you be bribed with Twitter tweets?
Come on, can you?

I am reminding myself now to update the Facebook wall page for this chapter.


STARTING A DIALOGUE SHOULD BE THE GOAL OF ANY AWARENESS CAMPAIGN

Totally stuck on this shirts idea... I suddenly envision a shirt with a large copy of the triple blood cell VF logo shown alone in a with no text at all on the front of a shirt. ON the back is some pertinent catchy slogan. Then print the VF website address, phone number, whatever, in smaller print maybe on a pocket or maybe just in subtext below the slogan on the back. That should be legible, but still relatively small so that when someone comes closer to read that smaller text, they are drawn into initiating a conversation with the wearer of the shirt, hoodie, etc..

The slogans could vary, like various patient inspired themes related to Prednisone Awareness, Overcoming Pain, Positive Outlook, Funny jokes about side effects, etc. Maybe even pithy quotes of words used by the patients themselves to describe their condition. Preferably the positive or funny sayings... :o) Not the “wish you were here in vasculitis hell” variety.

Though, I am suddenly thinking, “I walked a mile with vasculitis, and my peripheral neuropathy is killing me.” Corny... but I bet you can do better... I am waiting.... Email me.

For example, Meaghan's blog is subtitled: "Welcome to the Predni-Zone". I think that would be great on a T-Shirt. People would natural stop and ask what it means, and that conversation would lead to increased awareness. Others patients and caregivers might have similar slogan-like sayings they attribute to their illness.

Speaking of ownership, what about "I PWN Churg-Strauss". Pronounced "POWNE" This is a take on the gamer slang, "PWN = Power Own" which means to dominate your opponent in the extreme sense. Young people who are familiar with the term PWN would wonder if [insert name of your condition here] was a new computer game, and the questions would follow. The T-Shirt, poster, mug, bumber sticker, etc, would be cool enough to be discovered adorning the hippest people at the swankiest places, and all that would start up awareness conversations.

How to do this in an affordable way? Consider partnering with Cafe Press the online promotions company. They make the stuff as it is ordered and a percentage goes to the sponsoring organization. So, less percentage, but a higher volume. To main tain non-profit status, this must be done at the national level, but it is just possible that if a chapter has their own successful design, then perhaps a bit of the proceeds could also be earmarked to offset chapter or regional awareness event costs. Not just because, but when there is an event, it would be easier to request a budget if you know your chapter is also producing income. Hmmm....

Hey, lookee here:
The VF of Canada has it going on already. I also see representation from BechetsCanada.com and CNSVF (Central Nervous System Vasculitis Foundation). They are not standing still. Neither should we.

Hello Vasculitis Foundation (VF)?
Hello Churg-Strauss Syndrome Association (CSSA)?
Hello others out there?

Another thought would be to make the artwork available and allow patients and their families to exercise their creativity by designing their own T-Shirts and having them made, like Meaghan plans to, at the local T-Shirt company. This method is less controllable, but it is also more personal and offloads the cost of printing and distribution to the grass roots level. By partnering that effort with a T-shirt contest, people would then be encouraged to submit their creations for consideration for some award, like perhaps free registration to the next VF Symposium in 2010? Or the one after that in 2012? Whatever... Just do something to keep things going.

One final thought as we are actually standing up to leave CPK.

If twenty people showed up at this monthly meeting and ordered a drink and talked for an hour, it hurts nobody and helps the participants.

Come by the next chapter meeting and say hello. Better yet, the next time you go to the doctor, find out who the others are and invite them to come with you.

Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

Bechets patient and track star, Sanya Richards’

Here is a vasculitis survivor's success story.

Some of you may recall seeing Sanya Richards run in the Bejing Olympics and win some medals for the US Track and Field team.

Sandra is the American record holder for the 400 meter dash. I just watched her win it again live in the 2009 Prefontaine Classic. Pretty impressive for someone with vasculitis. Impressive for anyone, all the more so with vasculitis.

What you may not have known, as I did not, was that she was diagnosed with Bechets Syndrome in 2007, so she really had to struggle to even make the team for that Olympics. Her determination and pure gritty force of will made all that possible.

What inspired me to write today is learning how Sanya continues to connect with Bechets and with vasculitis. I have seen other notable personalities turn their backs on the cause of awareness and research, and this woman is not one of those.

She has prompted her corporate sponsors to donate items for fundraisers, and she regularly speaks out about her vasculitis.

Read her blog to learn more:
Sanya Richards’ Track & Field Forum » Behcet's Corner

Here is her bio at USA Track & Field:
Sanya Richards


Here are some more links to help you hopefully find some inspiration in the life story of this courageous and tough lady:


Putting illness behind her, Sanya Richards finds her stride | Texas Longhorns News | Sports News | News for Dallas, Texas | Dallas Morning News

2008 Walk for Behcet's Disease - NY - American Behcet's Disease Association

Behçet's disease - Wikipedia, the free encyclopedia

Perspective on death and illness

Let me talk about death.

I am faced with the imminent death of my daughter, Meaghan.

She might die on Friday when she gets her first infusion of Rituximab. Death is one of the known side effects. No kidding. It is rare, but it puts me in mind of serious thoughts.

Women are the statistical majority of autoimmune patients. Thus it seems a dark irony that women are in a slightly higher risk category for death by side effect of this medication. Perhaps it is par for the course. Would I feel this way if it were me who had to face the needle on Friday? What are the actual odds of a bad reaction? Does it even matter? Whether it is one in ten billion odds or whatever, still has the important part... the one. Which one is she? Is she the one?

Swinging the pendulum of fate... She might die, or she might come out with an improved condition. That much has been true since the day she was born.

So... How do I feel about that? I mean about my daughter maybe dying?

Numb.

Just bleeping numb.

Stuck in between hope and fear. Leaves me feeling a quiet calm akin to feeling nothing. Is this a good thing? It certainly makes it easier to function. Like being in the eye of the storm. Chaos rules all around, but here -- in the center -- it is possible to remain calm... How does that work anyway?

Given a choice between Hope and Fear, I choose Hope.

Meaghan has been flaring off and on most of this Spring. It is her first vasculitis flare since the diagnosis, so she and I did not know how to recognize it at first. Just the usual never ending daily wondering about little perks or drops in this symptom or that symptom, and wondering how and if this or that might be related to vasculitis. Is this just some "normal" symptom? Is that...?

What is a "normal" symptom when anything and everything might or might not mean something in relation to the vasculitis? Plus, when the question: "What does it mean doctor?" is met with --- Silence --- because the doctors are also trying to figure this stuff out. Talk about jumping at shadows! Chronic illness is really very complex.

Meaghan has to deal with this condition largely herself, but never alone. Like every other life skill, managing her condition is something only she can do well. As her parent I am always there, but I also encourage her to take the lead as much as she can to prepare for the someday when I am not there to help her.

She is learning that if you stick around long enough you get to learn how to discern the significant symptoms from the non-remarkable ones after some gaining experience on the roller coaster ride to vasculitis hell. And there is much good and bad advice alone the way, even from the initiated.

A sidebar...
Okay... So why is there no sanctioned mentor program in the larger vasculitis community? Why not figure out how to get more experienced patients together with those who are new to this so they can share what they know? I mean Shannon Morgan is great -- fantastic in fact -- but is there a larger effort to track down these unknown vasculitis patients and support them? Maybe that is our job, your job, my job. They are our kin if you think of it broadly.

Ahh... You say go to Yahoo and check out CSSISG, Saavy, Wegeners4Parents, VasculitisSurvivors, etc. etc. Good... Good... but what about the one on one approach? What about people who are not on the Internet? How to reach out to them so they know they are not alone?

That is what local chapters like CNMVF are for? Okay, more good... but what about those who cannot come to the meetings and also do not have the Internet? What about the children? What is happening with these people?

So, back to my topic... I have come to grips with the possibility that my child could die at almost any time, or with good luck and good treatment she could live to be a hundred years old. This freaky uncertain existence gives me perspective on life that I might only have approached in a purely academic sense prior to this past year. Eyes open instead of eyes shut. Knowing anything can happen, at any time, so why worry? But I do worry anyway. Can't help it.

She is driving a car now, and could get smashed to bits by a cement truck on the way home from school, so what is the difference? In fact a car accident is possibly more statistically likely than anything else she is dealing with.

She might even die in her sleep if her cat does not stop sleeping on her face. Just kidding... probably.

She will live, or she will die. What really matters is how well she lives while she is here.

So, you might expect her to stay in bed all day and never go out. Right?

She has had quite a few of those sorts of day. They are not fun.

Now, let me talk about illness.

Chronic illness I mean. Not the regular kind where people, "get sick then get well again with a pill." That does not count here. Whether it is the flu or any other acute condition... no matter. Go cry to someone else who will listen to you whine about being sick for a day or a week. Chronically ill people typically do not complain as much, because they know what it means to be really and truly ill. You are sick for a lifetime.

Chronic illness is a 24 hours per day, 365 days per year, ordeal. It is something you survive more than get over, because the entire point of it being called "chronic" is there is no cure. Moreover, it is not simple to diagnose or treat. You don't "get better" in the same way other people get better from an acute illness.

Wishing for remission is like wishing a deadly killer wolf which has been raiding your farm will go raid the neighboring valley farms for a while. You have some nights free of tyranny, but you always know that wolf can come back. So you must remain vigilant.

Acute patients take a pill, and maybe sleep-in for a day or three, then they get better. Chronic patients just have good days, and bad days. More accurately, you have the morning you can tolerate, and the afternoon where you wish you could disconnect your nervous system from your conscious mind, and the next day it might happen in reverse. There are good or bad periods in each and every day. It never ends.

It is like riding the roller coaster to hell, but of course the fear, uncertainty and doubt will torture you on the way there. Not to mention the pain. And to make things really interesting, let's take the whole family along for the ride so they can watch you suffer.

As a parent and caregiver I do not get to take my babies' pain away. I do not get to make it all better with a kiss. I have to stand by, mostly helpless, while she suffers. It really really sucks. So I often talk about this in terms of WE. We are a team, and We are suffering this illness, though do not think for a second that I forget she is the one with the actual disease. Still...

We are brave. We are strong. We are hopeful. We are so many other euphemistic things that it is tedious to even list them now. But We keep going. She keeps going, and I keep pushing her, picking her up, and letting her cry when the feelings of anger, despair, and literal pain and agony get to be too much for her to hold her emotions inside.

And I try like crazy not to let my emotional baggage leak out on her. I fail at that, by the way, more often than I care to acknowledge. But We keep going.

People on the outside never understand what these patients go through. Those of us who are close enough to mostly get it, still have this sure knowledge that we really have no idea, and never will... We caregivers do what we can to get into it, but mainly MUST maintain some distance to preserve our own "non-Prednisone inflamed" emotional reserves so we can be there to support the patient when our chronically ill loved ones feel like giving up. We have to keep going too.

So, I say again... You might expect her to stay in bed all day and never go out. Right?

Let me tell you... In spite of the vasculitis, she is living well.

She has friends and family who love and even adore her.

She is doing more than well in school, and excels above average at most of her subjects. This at a school full of very bright kids. She is respected by her teachers and by the peers who matter.

Before asthma stole her wind, and then peripheral neuropathy wrecked her foot, she had the pleasure to participate in sports and saw success as a starting athlete who played most of every game because of her valuable contributions to the team.

She has participated in arts and music. She spent several summers as a camp counselor. She has been involved with Junior Civitan, Model UN and Mock Trial. She is one of the editors of the school poetry magazine and is now working to found a new school publication for best student essays.

She is one of the 2009 Make-A-Wish recipients, and her first wish is to travel to England and visit the original 100 Acre Wood from the Winnie-The-Pooh stories. If international travel is disallowed, then she will journey to Disney World in Florida and have the kind of special access that Disney affords to Wish Kids.

She is going to participate in an EPGY Summer Institutes High School course this year at Stanford University. No small achievement just being accepted, and I have no doubts that she will do very well once she is there.

So yes, in spite of the vasculitis, she is living well.

But even with all that...

Because of the vasculitis, none of the rest of the good parts can be enjoyed fully without some of the shiny being ripped off.

Just ripped off the surface. But you know... it is still mostly shiny if you choose to look at it in just the right light. Just turn it this way, and that way, until you can see the glint...

Look for the shiny.

Perspective, I said... Yeah... This is a hard one.

A few minutes before I started writing this, I saw a mother pushing her invalid son in a wheelchair. He was old enough to be at least in High School, driving, dating, getting jobs, etc. Instead, he was tied in the chair to prevent him falling. He was drooling and yelling like a baby. It was impossible for me to understand what he was saying.

She just wiped his chin, and kept going, answering whatever he was mumbling that she has somehow learned how to decipher. I imagined how she must do EVERYTHING for him....

Just pause there and reflect for a moment on what EVERYTHING must mean for a seventeen year old boy...

... He probably has a bleak future compared to some. Compared to my daughter... and my future is perhaps better compared to this woman who is literally giving her life for her son. (Though in practice that is in a much less literal sense than some would suggest when they use that phrase.) Still, her quality of life has been set aside for his greater good. How much each caregiver sacrifices is highly relative.

That is perspective.

My daughter could be dead.

My daughter's condition could be worse.

These are small concessions to the afflicted, but they are concessions nevertheless. Nobody wants to be told, "Buck up Charlie! It could be worse!" But hey, lets face it, it could be worse.

That is perspective. It actually helps in some small way. I listed some of my daughters accomplishments earlier, and those are no small feats for any healthy person. For someone with autoimmune vasculitis, they are monumental achievements.

Just making it through a year of High School in spite of a great many medical related absences is an accomplishment. She has done that and much more by focusing her efforts. I did not do that. She did that. I am proud of her.

You have to look for the silver lining. You have to find the shiny parts. It is the only way to keep going.

So where is the stone mason? I want to commission a statue. At the unveiling, we will hear the Master of Ceremonies say, "For Perseverance in the face of overwhelming adversity, this statue is dedicated to... Insert the name of your vasculitis patient here."

So, yes. I am thankful for the shiny parts.

And I am worried about what Friday will bring. I hope the Rituximab medication will work as it has in so many others and bring her some relief. I worry that it might not live up to its billing, even though it seems the anecdotal evidence suggests that most CSSers who have taken it report they are happy with the results. We know her doctor will be careful and take appropriate precautions. So we have hope.

Survival is a matter of maintaining perspective.

Not a totally happy missive, but really just an honest one.

Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

Local vasculitis patient to become a Make-A-Wish recipient

Our own chapter member, Meaghan Carpenter, who is a Churg-Strauss Syndrome vasculitis patient has been approved to receive a wish from the Make-A-Wish Foundation.

She learned of this today and now must decide what she would wish for. More on this story later as event unfold.

When dealing with chronic illness, there is sometime a little silver lining in among the clouds.

Good luck with your wish Meaghan!

: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org

NMVasculitis is on Facebook!

If you have a Facebook account, and are affiliated with the Vasculitis Foundation, or are active in the New Mexico chapter of the VF, then request to join our group!

The group is classified as "closed" because I do not want unaffiliated strangers joining and wrecking the vibe I hope will develop there.

Check it out here:

NM Vasculitis Foundation Chapter
http://www.facebook.com/group.php?gid=44602937338

: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08 - Celebrating seven months without vasculitis symptoms!
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org

Stress and Relativity

Something happened today that highlights a little window into something we all have to deal with. Perhaps it is significant that that holidays are known for increasing this particular health issue: Stress.

Tonight, just before I left work for home, some person drove up behind my truck, jumped out, and stole an item from the back of my truck. Then they drove away before they could be properly identified. It was an item that can be replaced, but it was still...

Well, in medical terms, this is what you call a stress event. A stressor. A bit of annoying little bit of phlegm on an other wise clear day.

It annoyed me. A lot.

I called a family member, who listened to my emotionally laden report. I really just called them to tell them I want to have better lights installed on the building to discourage such thieves and hoodlums from revisiting this "Stress Event" on anyone else. I was angry and thus not entirely rational... I just wanted to vent...

Instead, I got reasoned and rationed and suggested... The well-intentioned advice was good advice, and I was responding to that just fine. It was even helpful really...

Then, the tide turned and I got to listen further as I was told how I should keep my stress away from my daughter. I was befuddled and asked why, to which I was told, because, *DUH implied*, she has vasculitis, and therefore has enough stress to deal with.

That was worse than the burglary. I was also then reminded about one or two of my own recent failings, because I do not have a perfect temper. I am her father and she is a sixteen year old girl... so sometimes I get upset with my daughter when she does annoying things. Just as I annoy her sometimes. I suppose I should be shot, or something, but instead we just deal with it.

In response, I got the impression I was expected to accept this little drubbing and say something humble like, "You are right, I am a jerk, I will endeavor to be more perfect from now on, and try to put things in perspective... " Which of course was not said, but that is how I felt. The trick is, that perspective is exactly why that advice was inappropriate. Not that my family member could know that, but still..

Instead of blithely confessing my sins, I tried to explain perspective... I try to suggest that coping with vasculitis and the stressful event of having something stolen from my truck are not remotely related... but in response I was treated to an even more patronizing accusation of denial, then some kindly insistence that they are of course related. Apparently all stress is related... who knew? [Sarcasm intentional.]

It would seem that to some people, there is this concept of "Ye Old Bucket O' Stress," which apparently has a finite capacity. Once filled, the bucket can hold no more and then terrible things must surely happen.

This family member has dealt with lots of stress indirectly and directly, and has always been there for just about everyone in my family. I aspire to be as useful myself. So, there is no fault here, but the approach we take is completely different.

Instead of holding onto the stress, and counting it, and taking it out every night and counting it again... instead I choose to count blessings. I figure out what is possible to control, and I take control of that thing. The things I cannot control, I let go. I just do not think about them more than is absolutely necessary.

It is precisely this attitude, which explains why when my daughter was diagnosed, I was calm, and replied to the doctor, "So, then what can we do?" Then we proceeded to do those things. My daughter is a product of my teachings, and her attitude has always been to overcome all challenges. Treating vasculitis is a long hard road, and fraught with pitfalls, but we persevere with hope and courage. We do not dwell on thoughts of weakness.

When my truck gets burgled, I have no such calm. To me, the rest has become normal, and this burglary is the notable stressful event.

Everything else in my life, and most notably vasculitis, has given my daughter and I a new baseline. A baseline that most people cannot comprehend who do not have a rare incurable illness in the immediate household.

Most people have no idea what they can handle until they are tested. And when you have a rare incurable condition, as my daughter has, and which I also feel like I have... then it becomes necessary to live life by a different set of rules.

No counting stress. That is one of the new rules.

Putting stress at the forefront of our mind, would be dwelling on the negative. It would be self-defeating. Instead of saying, "Poor her, she has vasculitis, let us insulate her and protect her and keep all possible harm from her," I say let me arm her to the teeth with coping skills so she can take on all challenges. She does not need to be made weaker, she needs to be made stronger. When the going gets tough... as the saying goes.

It is not a big deal to let emotions fly when someone steals a replaceable item from your truck, but you have to accept the big stuff; you have to accept all the horrible side effects of Prednisone and how they screw with your entire life, and the every day alertness for any sign of a flare. Since vasculitis is systemic, it can happen anywhere, anytime, with little or no warning... so that is very stressful. But is it not a stress event.

Some days are better or worse than others, the in the big picture, dealing with vasculitis is normal to us now. If there is a "Ye Old Bucket O' Stress" then we must have traded it in for the bottomless Bag of Holding version, because dealing with medications, doctors appointments, fatigue, and side effects has become the normal way of being for her, and indirectly, for me also. And yet, I still get provoked by the ordinary things. It is a matter of perspective.

So, there is no rule that says when you have so much else to deal with that you must then take everything else in stride. In my opinion, the "Ye Old Bucket O' Stress" concept must come from the TwilightZone, because both stress and the ability to cope are expandable without limit.

Human beings are capable of adjusting to just about anything, and those who have not walked a mile... just have no clue.

Following my signature is a little article about stress. One of many such that we have read and absorbed this year, because coping with stress is important, it is just not something you need rubbed in your face. So this will be a brief reminder to others out there there that no matter how bad it gets, you can always do something about it.

: Joseph Carpenter
Email
Albuquerque, NM
CSS Parent, Daughter DX March '08 - Celebrating seven months without vasculitis symptoms!
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org


InteliHealth:
"Coping With Stress

Stress is a part of life. From being stuck in traffic to falling behind on paying bills, too much stress can wreak havoc on our bodies. If you have a chronic illness, even small tasks, such as making dinner or picking up the children from school, can become overwhelming. Research on how stress causes medical illness is still in its early phases. We do know though that stress can cause physical symptoms, and may increase the rate of progression of a disease. Here are some ways to reduce your stress.

Adjust your attitude. According to researchers, you can better cope with stress by focusing on three ideas: challenge, control and commitment.

• Try to interpret stressful situations as challenges, not as threats.
• Determine what you can control; sometimes the only thing you will be able to control in a stressful situation is the way you respond, but that’s a start.
• Make a commitment to be good to yourself by eating healthfully, thinking positively and maintaining relationships with people you care about.

Learn to problem solve. The key, say experts, is to think through difficult situations systematically.

• Break problems into smaller pieces to make them less overwhelming
• Focus on problems that really need your attention and leave the rest
• Know your limits
• Learn to be flexible
• Be realistic about your choices

Communicate. Keeping your troubles inside only adds to stress. Find someone safe to talk to about your worries; it will reduce stress and help you deal with practical problems. If you have a chronic medical condition, participate in a support group.

Exercise. Regular exercise reduces stress. It helps protect the cardiovascular and immune systems from the consequences of stressful events. Whether it’s swimming, walking or another form of exercise, find time to do the activity on a regular basis.

Take control of your diet and your sleep. It’s hard to do, but if you eat a well-balanced, nutritious diet and get a good night’s sleep, you’ll have more energy to cope with stress. And if you’re tired and cranky, you’ll be more susceptible to stress-related ailments.

Do something for others. Volunteering for a worthy cause can be a great experience. It also can help you forget about your own problems and increase your self-esteem."
http://www.intelihealth.com/IH/ihtIH/WSIHW000/8271/21849/244360.html?d=dmtContent